Hi Everyone,
I had to share this...
I found from the Sjogren's World links page..that in 2002 a Vaccine for Sjogren's had been developed...very promising except I asked myself what happened to it !
Well I persevered and contacted the sick kids organisation.
I received an email today telling me although promising ..the project for a Sjogren's Vaccine has been shelved at this time ....due to the lack of funding.
A travesty ?! ...Im sure most would agree if this is true...for our kids sakes especially..
Heres the link to the original press release re: Sjogren's Vaccine
http://www.sickkids.ca/mediaroom/custom/Sjogrensyndrome.asp
Hi K and C,
Yes this is a travesty.....I wonder why this is the first I have heard of this.
Thanks for bringing it to our attention.....maybe with more time the project will get the funding it needs as sjogrens is becoming much more widely known today than it was years ago. We can only hope and encourage the people who have the power to promote and fund this type of research to keep up the work that was started years ago!
Unbelievable. Actually I guess it is believable is the sad truth.
Kathlee
Yeah I don't know what the go is...Im concerned that if a potentially disease stopping answer has been found specifically for our disease why we would let it slip without checking it out first..as you say Lynn Sjogrens is (albeit) slowly gaining recognition as is the words 'Autoimmune Disease' ..so it seems even more wrong that money is not being found to allow this answer to be developed.
Why is money being put into research ..when we are not developing the answers that we already have..
A Vaccine is a proactive cure...in effect families prone to Autoimmune Diseases could be Vaccinated for Sjogrens..in effect eliminating the disease..(at least the hope)
why would you not pursue this .!
The Sjogrens AI Charities that have money and spend it on Research..perhaps they are not aware..
Sorry to sound a bit angry...guess I am a bit.
Its probably true to say that Pharma's are not going to be interested in a preventative cure...also the same problem that the Faustman TB Vaccine is facing..where it is totally privately funded...and is probably why a Sjogrens specific Vaccine didn't get enough money..as not enough numbers and rich enough people who are concerned about Sjogrens to be able to fund it...all my assumptions but Im scared Im right.
At least we know what happened..I hope it A) Does not happen again and B) As Lynn says..it will be re-funded once more...in the meantime I shudder to think of how many more people will contract this disease and suffer...when just perhaps a Vaccine (by now developed) could have prevented it.
Unfortunately this is one of the victims of medical funding in a country where the bulk of funding goes to providing free medical care...the money for research has to come from outside the system, and drug companies are the first resource, charitible donations are the second. Drug companies aren't favourable to funding research into expensive projects that don't offer high return, and the return on a one time vaccine for a disease that they had trouble finding 100 people to include in a study just doesn't spell profit.
I was involved in our hospital's research department in 2002 when Dr Bookman was recruiting for this study, and from a patient database of over 300,000, we didn't have any who met the study criteria. If it had occurred 2 years later, I would have qualified!
Wow linda
Thanks for sharing your info and thoughts...
So two things are major stumbling blocks....one obvious is as you detailed ..funding..and the other the process.
Gotta be a better way/s
or the relatively small number of people diseases are going to struggle always to get their rightful cure.
What can we do ....collaborate in funding efforts maybe..rallying the charities to the cause..focusing on developing the potential answers already known instead of funding more research ?!
..but we cant change the process to make it easier..thats beyond but the powers that be. ?!
Though..perhaps if they change the way trials are accessible with the accessibility to the billions via the internet may provide the patient access for trials such as these...it is at the moment all disjointed..this is a human world wide problem..
Having potential Vaccines sitting on the shelf makes one sit uneasy.
One thing your have to take into consideration is that, in order to qualify for studies, potential people need to meet much more stringent criteria than just being diagnosed with a disease...they have to meet basically all of the diagnostic criteria, and have no other conditions that may simulate the disease being studied, because the results must be specific to the main disease. That means that sero-negative, and often secondary SjS patients, are disqualified. This really narrows the potential source of enrollees.
When you take a diagnostically small group to start with, and remove everyone who isn't textbook, with no factors that muddy the waters, you don't have many left. When I think about it, I wouldn't have qualified for that particular study, because of a pre-existing DX of Sarcoidosis.
I've been involved in medical research from both sides, as a subject and a researcher, and it's an involved, complicated, redundant, repetitive, microscopically detailed and expensive endeavour. One study I considered actually was willing to pay me $50 to participate...all I had to do was provide my own transportation to California (from New Brunswick, Canada) three times a year and pay for accommodations for four days each visit! Guess what, I didn't enroll! I was a participant in one of Dr Bookman's studies many years ago, but it was primarily statistical, didn't do much for discovering new treatments for Sarcoidosis.
One factor in the SjS vaccine that might be able to bring it back to the forefront is the potential application to Type 1 diabetes, but again, you're dealing with a possible single dose to prevent a disease that provides drug manufacturers with a ready made permanent customer base. I don't mean to paint the manufacturers as heartless money grabbers, but their main reason for being is profit...its business after all. Most of the advances in modern medicine have been financed by drug manufacturers, for the improvement of quality of life for millions of people.
Linda
Yeah I agree with all what you said.
Relaxing the stringent requirements for trials may help..that requires a new process way of thinking...perhaps globally enlisting participants is a quicker way..just need s to be successfully organised and coordinated..
There is always a better way.
This is called "market driven economy" remember, there are only 4 million people in the U.S with Sjogren's and drug companies aren't in the business of being nice to people. Most drug companies are publicly owned. A publicly owned corporations first duty is provide added value to the stockholders.
It's nothing personal against Sjoggies, just not good business to find a cure for such a small demographic.
That's why drug companies spend less on research then they spend on dividends to stock holders, stock buy backs and maybe even advertising, first duty is to the shareholders.
If Mike was still with us he could probably tell you how much uncle Sam spends on drug research, it's a lot. Besides, if there was a vaccine, everyone would be complaining about having to driving to Canada to get it, because it cost too much in the states and it's not covered by your insurance company.
Face it, you can't win, your a Sjoggie.
The one thing that I have noticed is that the number of people said to have sjogrens in US is 4 million and that number has not changed over the years. I think the big reason for this is that there are so many more people than this who are affected but are not diagnosed because it is taking so long for the doctors to get educated enough about this disease.
This is a disease that was only first identified in the 1950's and the dry eye, mouth, etc were the main symptoms. So many of the medical schools have not updated their information and education about this disease.Remember that the new docs coming out of school as only as good as the old docs who are training them. It will take a long time for this to catch up in the medical establishment.
The good news is that so many of us as patients have had to be diligent and aggressive to get diagnosed so we are taking an active part in spreading the news and educating the doctors. In the past 2 years there has been a significant increase of "newbies" on this site which tells me that more people are getting diagnosed. When enough people are diagnosed and there are more articles in the magazines and on TV, newspapers, etc plus enought lives and businesses are interfered with they will discover that "yes" this is a significant disease that needs attention. The drug companies are going to have to figure out a way to do the studies that are more precise. This will come along as the doctors develop more information about this disease that is oh so much more than just dry eye, dry mouth. We are living in the very early days of identifying this disease and I think we will be seeing a lot more info over the years. About time Too!!! Irish ;D
Guys thankyou for getting involved with this discussion
Just want to say...dont forget the rest of the Sjogrens World !!..this forum is called 'Sjogrens World'.....many more than 4 million people have Sjogrens in the World..its not just the numbers in the US the drug companies consider...
Therefore although the numbers probably are way smaller than perhaps Diabetes....worldwide...its anybodies guess how many more millions of Sjogrens affected people there are !
Epson I agree to disagree that we should accept that we are 'Sjoggies' and just accept that's the way it is...we have Autoimmune Diseases...the Vaccine likely could treat other Autoimmune diseases as well.
We are talking here about money...and if that's all it is..then money could be raised.
I get angry with big Pharma's just as much as anyone..and i am reminded all the time where the money goes..not really where we need it..
We cant just forget about the future and our children...its a bit similar to the arguments about global warming...you can stick your head in the sand or you can fight for a future ...its not about accepting your disease...we dont have a choice anyways..but its about looking forward...not standing still..
We must fight for our right to live !
I forgot to add that several years ago I read an article that stated that the researchers in some circles are beginning to think that the "Sjogrens" may be the initial autoimmune disease that actually leads to other autoimmune diseases. That could be very possible. Might be that most people have sjogrens in some shape or form but no dry eyes and negative blood work. But, they may be positive for lupus and one of the many other autoimmune diseases. Will be very interesting to see this thing unravel. Irish ;D
Irish
Yeah I think they call Lupus the cousin of Sjogren's..its all related at the top by being an Autoimmune Disease..therefore the significance of any potential Vaccine such as this ..is ..Huge ! ..
many of us go on to acquire other AI's.. I myself have a fair collection already..it would be another advantage being able to stop this occuring.
This particular Vaccine is unique..the studies revealed that it reversed the symptoms of the Sjogren's disease even when Sjogren's was fully developed in the body.. (we are talking mice here still but nevertheless...a unique result)
I can add a little more info for those who are interested.
A patent for a lot of the ideas behind the Vaccine has just been re-applied for and republished..Im assuming to protect rights that would otherwise become public domain..
....so at some level at least it appears someone wants to keep this alive.
For interested parties wanting to know the science behind it all ...do a google on patent # US20080058271
Has anybody forwarded this information to the Sjogren's Foundation yet? I'm going to go ahead and do it again anyway - this is worth funding.
A vaccine that can REVERSE the disease process after it has developed - this is indeed huge.
I'm going to see Dr. Vivino in September - he does a lot of research - I'm going to give him this information and try to stir up some interest as best I can -
I've never been in sales, more of a computer geek - can any of your sales people out there give me some tips on how to promote this project? I wish I was Bill Gates and had a pile of money and could just hand it to a researcher and say there you are - go for it. (Sigh, OK enough wishful thinking - back to reality.)
Sue
I sent an email to research@sjogrens.org
Dear Sir or Madam:
I am a Sjorgren's sufferer and I belong to a forum called Sjrogren's World Community Forum.
See the following thread:
https://sjogrensworld.org/index.php?topic=6133.0
Recently one of our members came upon some very promising research towards a vaccine that in animal models actually reverses the progress of Sjrogren's even after the disease has fully developed.
See
http://www.sickkids.ca/mediaroom/custom/Sjogrensyndrome.asp
Upon further inquiry, our members learned that this promising research had been discontinued due to lack of funding.
We believe this would be a worthy endeavour to fund and I would like to submit this to the Foundation for your considerations.
Sincerely,
Suean Jennings
Mansfield, Pennsylvania
OK, misspelled my own name so this definitely proves I have brain fog. Also, probably shouldn't have said "our" members, just "some" members or maybe just "I" want to see this being funded!
Sue
The letter is perfect. Don't change a thing.
Wouldn't it be cool if they took up this research!?
Janna
Thanks Janna!
The Sjogren's Foundation offers grants only to US researchers. I looked up the patent for this vaccine and it is being sought by two Canadians - Hans-michael Dosch and Shawn Winer from Toronto Canada.
I'm really confused, why are Canadians applying for US patents? Do they need to get US researchers involved to get the Sjogren's Foundation grant? Also, if the US was involved they could apply for an NIH (National Institue of Health )grant. http://www.nih.gov/
I just saw Dr. Gene Watson from Rochester's Strong Memorial Hospital on Friday. He keeps a database of 50 Sjogren's patients used for clinical trials - he was one of the original researchers on Pilocarpine. He indicated to me that the NIH has been granted a lot of funding to research autoimmune diseases recently.
Kindandcaring - who could we contact to suggest these avenues of funding from the US and get this project off the shelf?
Sue
Sue, the reason that Drs Dosch and Winer are applying for US patents is that, if they don't, their work can be taken and used by any research facility without giving credit, unless the resulting discovery causes problems, in which case, if they haven't patented their work to the level they have achieved, they can be held responsible for any adverse results.
For example, the first patent for Insulin, the application of which was discovered by Dr Frederick Banting in Ontario Canada in 1920, was issued to an employee of Eli Lilly Company, a US firm, in 1922, although Banting was blamed for early failures due to reactions to the unrefined nature of early insulin. It was only after the patent was sold to the University of Toronto ( for $1) that the research facility was able to "roll over" any profit into further research, and Eli Lilly Co was invaluable in their continued research in purification and mass production. With all that financial business surrounding the work in the 1920's; Nicolae Paulescu, a professor of physiology at the University of Medicine and Pharmacy in Bucharest, was forgotten as the first one to isolate insulin during WW1.
Although scientific discoveries made by employees of a university or research facility in Canada do not provide any direct financial reward to the persons responsible, the facility by which they are employed can claim any financial gain, and use it to fund further research...something that we know is desperately needed.
Guys ..and especially Sue
Well ..because of the time differential and other commitments Ive missed posting this till today...Ive contacted the 'Sjogren's Syndrome Foundation' and they are now looking into it...Steve Taylor (CEO) is going to try contacting the Researchers..
He did tell me that they tried before on occasions and for some reason did not get a response...however he is going to do his bestest to find out whats going on...if the Vaccine is worthy the Foundation may be able to offer funding..so that's good news..
I provided him with a copy of the patent which he was thankful for, he had not seen the information contained within the patent before.
He also told me the 'Sjogrens Foundation' are funding (through member donations) the Faustman Research...which is the other BIG Hope for us all at the moment.
'Steve was reassuring as he stated the 'Sjogren's Syndrome Foundation' will leave no stone unturned in finding answers for us all.
Thanks to Steve and the Sjogrens Foundation for taking this onboard. !! ;) :)
Perhaps we have gone as far as we can with this at the moment..we can but wait and hope that any news on the matter is positive.
Linda
Great points you made about why patents are kept going
lets hope their main interest in keeping the patent going is because they want to keep the credit..or any financial benefits
Linda:
I guess my confusion arises because I assumed Canadians applied for Canadian patents and Americans for US patents etc. but I am woefully ignorant of the patent system, obviously.
Great news and good work Kindandcaring!
I am very thankful to the Sjogren's Foundation.
If these researchers need NIH funding - maybe we could organize and write letters and lobby politicians. It is in the best interest of the government to find a way to heal us - decreases publicly funded medical expenses and returns us to the workforce as productive taxpayers, by golly.
You would not believe how much I had to rattle cages and shake bushes to get my autistic son the services he needed, in addition to working long hours with him myself, but I grew a backbone and I did it - and as a result, he can talk, unlike close to 50% of the autistic population.
My favorite bible parable is the Parable of the Unjust Judge:
Quote"In a certain city there was a judge, who neither feared God, nor had respect for people. In that city there was a widow who kept coming to him and saying, 'Grant me justice against my opponent.' For a while he refused; but later he said to himself, 'Though I have no fear of God and no respect for anyone, yet because this widow keeps bothering me, I will grant her justice, so that she may not wear me out by continually coming.' " (Luke 18:2-5)
If we persist we can make good things happen!
Sue
I am quite involved with the Sjögren's Foundation. They have accomplished a lot on our behalf. I will also follow up on this since I know them.
nisha
Sue
I love your life attitude !!
Great excerpt from 'Luke'
nisha
Yeah I had not realised until I started researching this topic that the 'Sjogrens Syndrome Foundation' Funded Research....its reassuring to know that there is a real "force" working for us to find answers...an organisation like this is a great way to donate financially or raise money for.. knowing then that the money goes directly towards finding the answers for the 'Sjogren's Disease' we and our family needs so much !!
Just in case anyone reading this post/thread is unaware about the Foundation here is a link.....I don't know where Ive been...how did I miss it before LOL...
http://www.sjogrens.org/
Together with Sjogrens World..we are blessed to have two organisations that help us...we must support them as much as they help us... this will enable us to help ourselves !
Sue –
The SSF has funded research for a long time, but since Steve has been there, more effort has gone into it. Each year the amount of funds dedicated to research (as opposed to education and the general fund) has increased.
The Foundation is working hard to educate not only patients, their families and the public, but also the medical profession. I am doing my bit on this, and am amazed at the ignorance out there!
The Foundation is still working with a small budget (as opposed to better known diseases), but apart from funding small projects, the hope is to provide "bridge funding" i.e. funding for a small project that then gets picked up by someone like NIH.
As mentioned in another post, if a celebrity had Sjs, it would become a household word. Until then, it is not "sexy" enough, so it is up to us to spread the word and help fund the research.
Thanks again for sending your letter.
nisha
You should all pat yourselves on the backs - congratulations for making a difference! We are all thankful for your efforts. Please continue your good work and PLEASE, PLEASE continue to post here any news that can give us hope. I really enjoyed reading this thread and look forward to reading what happens as a result of your efforts. Perhaps this flurry of activity will lead to something big (we can hope - right?). THANK YOU, THANK YOU, THANK YOU!
Cathy
Sue, Nisha..anyone heard anything ?.any news...yeah Im impatient... :)
I will try contacting Steve next week other wise.
Cathy, hi, thanks for your thanks !
Thoughts for the future,
We all need to contribute what we can...IMHO...none of us are on top of our game..so all the sick can only share a little..and if we all do that..it will account for a big move forward in finding answers for this disease..whether it be each of us making small donations or helping to make this disease more important to the media and the health system. (like Steve AKA BillyDude)...I encourage anyone who wants to feel better to actually do one of those two things...
If we all donate a little of what we can...
If we all raise awareness of this disease ...if it be either by posting a Youtube Personal Account of this disease..or writing a letter to your newspaper...lobbying your workmates/friends and family...every bit from all of us will help get us all where we want to be...feeling better about ourselves our futures and our childrens futures.
One things for sure..we cant rely on anyone doing any of this for us !
Sorry for the passion..! I dont want it to come over that Im pushing or being aggressive..however I would agree that I really believe we must all act as much as we can...when we can..
All me best
I didnt mention.... rather than just preach...I will be making a Youtube Video...I want to get important message out that
A) People who have this darn diseases are not alone...
B)that there more people than you think are sick with these AI's (including men)
C) Also that you might look OK but you are NOT...!! Give me a couple of weeks to get things together before it occurs.....
Now no more off topic talk..this thread is most importantly about the Sjogrens Vaccine
Hi Kind and Caring.....I'd love to see that you-tube video when you make it. I just made my third one yesterday.
This will link you to it.
Steve
http://www.youtube.com/watch?v=kjW7wOPZ6ps&feature=email
Kindandcaring:
I haven't heard anything yet - I'm impatient too. We've all suffered long enough in my humble opinion.
I'm composing a letter to Faustman labs - I'll offer them my help and maybe my body (which is not worth much these days)!
Sue
Kindandcaring
I don't know how to make a youtube video, but this is my bit of awareness raising, which is on the British Medical Journal
website.
http://www.bmj.com/cgi/content/extract/337/jul16_1/a280 (my bit is the rapid response).
It may be published in the hard copy of the journal next week. I will let you know if it is.
Kathyx
kindandcaring and Sue -
We need to cut Steve Taylor some slack – he has been heavily tied up all this week, also last. I will be talking with him about something else and will check.
Be sure and let us have the link to your Youtube Video when you are done
nisha
Steve -
I just warched you on Youtube! Very good. Hope a lot of people see it. "Sjogren's Syndrome Saga" is not the easiest thing to say is it! You did OK though.
nisha
Quote from: Billydude on August 16, 2008, 05:24:56 AM
Hi Kind and Caring.....I'd love to see that you-tube video when you make it. I just made my third one yesterday.
This will link you to it.
Steve
http://www.youtube.com/watch?v=kjW7wOPZ6ps&feature=email
Great work Steve..just watched your latest...you are a trailblazer...and an inspiration for the rest of us..!
Can you give any advice to anyone on posting a video on youtube !
Quote from: nisha on August 16, 2008, 05:43:33 PM
kindandcaring and Sue -
We need to cut Steve Taylor some slack – he has been heavily tied up all this week, also last. I will be talking with him about something else and will check.
Be sure and let us have the link to your Youtube Video when you are done
nisha
Hi Nisha
Yep no I will not bother him for at least another week then......perhaps he is busy looking into the Vaccine.
Yet if you hear something please share.
Cheers
Quote from: Katybarstool on August 16, 2008, 11:14:15 AM
Kindandcaring
I don't know how to make a youtube video, but this is my bit of awareness raising, which is on the British Medical Journal
website.
http://www.bmj.com/cgi/content/extract/337/jul16_1/a280 (my bit is the rapid response).
It may be published in the hard copy of the journal next week. I will let you know if it is.
Kathyx
Hi Kathy
Great work !!... you are making a difference a change for the better for everyone !!
I encourage you to try youtube..you only need a webcam or a digital camera or a digital video camera..though Im just as new to it probably as you..
I will try and find a video to help everyone know the how to of youtube...
Thanks again for your efforts Kathy ..Top Job !!!
Youtube "How to Upload a Video"
http://www.youtube.com/watch?v=qFyIT7rVZ0Q
Hi Steve
Well done on your video. You really tell it how it is. I will think about doing one at some point.
Kathyx
Thanks guys about the video. Hey....I'm not techo-savey at all. I just use the camera setting on my digital camera. I don't know how to edit or do anything fancy. I'm obviously not all that techinical on my medical terms either. I'm just trying to give some honest coverage of what is going on. I just know that when I was trying to figure out what all my symptoms were I'd have found it easier to have found those videos from someone else.
Steve
Sue - In your discussion with Dr. Gene Watson, could you tell if he was optimistic that with all the new funding, there would soon be much more effective treatments or cures?
kindandcaring - do you know if the Faustman research through the SSF is in human trials? I know the Diabetes research is in Phase I from the Faustman website, but I don't see any human trials for SJS. I know it is supposed to benefit both diseases, but I'm assuming that it would have to be tested on SJS patients separately before being approved for us. In your contacts with Steve Taylor, has he made any comments about the research? Also, don't apologize for your passion. Keep it coming!
As I write this, my right mid thigh has been twitching for over 24 hours and my anxiety is increasing as a result. I'm really hoping that stress is causing this. I have a number of CNS symptoms. I'm hoping they remain mildly annoying and never become permanently disabling. A cure - PLEASE!
Thanks everyone!
Cathy
Nisha:
Don't worry, I'm not pestering Mr. Taylor - he's on our side! Thus far, I've written one (1) email to the research dept. at the Sjogren's Foundation.
I do nag, but my nagging (naggery? - is that a word?) is judicious.
Cathy,
Dr. Watson indicated to me "that, (although there is no good time to have an autoimmune disease), this was the best time to have one as the NIH has been receiving a lot of funding to study autoimmune diseases" or words to that effect.
I see Dr. Vivino in September - I know he is recruiting candidates to research a new drug that alleviates symptoms like Pilocarpine without the side effects. I will ask him what else he has on the back burner.
Steve - great video, very informative!
Best Regards,
Sue
Sue,
You are so fortunate to know two doctors with so much knowledge about Sjogren's. Please continue to share what you learn from them. I'd love to hear more about the possible new saliva drug. I'm on Pilocarpine now and it only works for 1 to 1-1/2 hours. I'm going to try Evoxac next in hopes it works longer. Hopefully if another drug is approved, it can be longer lasting. I hope Dr. Watson's statement proves to be right. I'd love to see that funding turn into a substantial discovery.
Thanks again for sharing with us. I'm having one of those days (weeks) where I just need to hear something hopeful.
Cathy
Hi just thought I'd share....I was a patient of Dr Bookman for a longtime, from about 2000??2001 to 2006. I began seeing him a couple years after I really knew something was wrong. I had to travel 2 hours. His bedside manner was atrocious. I would have been about 38 at the time. I remember leaving his office after the first visit and crying all the way home wondering what I had done wrong. He treated me like I was a head case and sent me away with no follow up appointment planned, no matter I wasn't going back. Only the phone rang 2 weeks later and i was to come back, his receptionist had to talk me into it, after all who needs to be treated like that and to feel crumby all the time too. But I did go. He then told me word for word "I would like to tell you you have lupus, but I can't because it's bigger than that" You can imagine my confusion and fear. I saw him about every 6 months or so after that never knew if he would be dr jekel of mr hyde. Once he told me at about age 41-42 when I was having aparticularly bad flare-up that "you're not getting any younger and you don't get it for free", I was speechless and wish I would have told him I wasn't aware of what he thought was old and that I hadn't got anything free helathwise since age 18! My hubby would have liked to have crawled across his desk and strangled him. Still it took til May of 2006 for him to finally book me into his sjs clinic and to diagnose the sjs. Funny fellow he is, I left his "care" after that. Found a new rheumy in Kingston who is wonderful. Sandra
Thanks Sue. Just trying to be honest.
Steve
Sue (sjenny)
Just wondering if you got a reply to the (1) email sent to R&D
Cheers
Quote from: jjj3 on August 17, 2008, 05:02:19 PM
Sue - In your discussion with Dr. Gene Watson, could you tell if he was optimistic that with all the new funding, there would soon be much more effective treatments or cures?
kindandcaring - do you know if the Faustman research through the SSF is in human trials? I know the Diabetes research is in Phase I from the Faustman website, but I don't see any human trials for SJS. I know it is supposed to benefit both diseases, but I'm assuming that it would have to be tested on SJS patients separately before being approved for us. In your contacts with Steve Taylor, has he made any comments about the research? Also, don't apologize for your passion. Keep it coming!
As I write this, my right mid thigh has been twitching for over 24 hours and my anxiety is increasing as a result. I'm really hoping that stress is causing this. I have a number of CNS symptoms. I'm hoping they remain mildly annoying and never become permanently disabling. A cure - PLEASE!
Thanks everyone!
Cathy
Hi Cathy
Hope your symptoms are leveling out today !
I think I can answer your query re Faustmans Vaccine Trial....the trial is for Diabetes...correct..the reason is perhaps alo of the funding was provided with Diabetes in mind...(laccoca foundation) and probably reasons of numbers..meaning the numbers of people with Diabetes is probably greater than SJogrens (however Id like to see the figures side by side) so they decided to aim it Diabetes first.
In actual fact the Faustman Vaccine was first used to fix up Sjogrens first !...then Diabetes in mice...so it is a very promising Vaccine if shown to work in humans.
Now the question is will they be able to use it on Sjogrens patients if it passes the Clinical Trials for use with Diabetes....well I dont know...anyone care to say the answer? I think its going to be a no..but I dont want to think that !
Perhaps if it works for Diabetes they would have to go thru yet another (albeit shorter) trial for Sjogrens Patients...to get FDA approval.
Steve mentioned they are putting funding towards the Faustman Research that is all I know.
if I hear anything more Cathy...be very aware..I WILL post it as fast as it as I can type..hoping still it could be a positive reply..but we will have to wait..sounds like Steve is busy..perhaps in negotiations...lets hope so.
Thank you kindandcaring. The SSF has given a grant to Denise Faustman for "Examination of human spleens for a Hox11 expressing stem cell involved in salivary epithelial regeneration". See http://www.sjogrens.org/research/research.html (http://www.sjogrens.org/research/research.html)
I'm wondering if this is something that will (or is) become a human trial that can be running concurrently with the Diabetes trial, thus perhaps we won't have to wait as long. I don't fully understand how the SSF research works. Can any of it be in human trials? I'm assuming not, but hoping it is. Do you know if drug trials publish any results after each phase or just after the end? Obviously, if they move from one phase to the next, there has been some success, but I'm hoping Faustman puts some info in her newsletter. Sorry for so many questions. You all are so much more knowledgeable about this process than I am.
Sandra - Sorry about your experience! That's terrible. Some doctors have no bedside manner. I hope you found someone who is much nicer.
Thanks everyone for your sharing your knowledge. I'm so very grateful.
Cathy
Cathy:
The drug Dr. Vivino is testing is called NGX267 oral capsule. See http://www.clinicaltrials.gov/ct2/show/NCT00637793?term=sjogrens&rank=14
Dr. Watson wants me to participate in clinical trials to use a "spit test" for Sjogrens versus the standard lip biopsy. They are trying to identify "marker proteins" in spit that would make lip biopsies unnecessary for diagnosis. I'm all for that!
Kindandcaring:
So far, I've gotten no reply to my email. But from what Nisha says, the Sjogren's Foundation is looking into it. I think what distresses me is that the researchers themselves did not respond to contacts from the Sjogren's Foundation earlier. If someone was offering me the prospect of some money, I would surely be in contact with them. Have the researchers lost interest or time or what's going on with the research itself?
Sandra:
I'm avoiding Dr. Bookman at all costs! "I'd like to tell you, you have lupus . . ." - What in the world is wrong with that man!???! Thankfully he's not a psychiatrist, I predict all his patients would be jumping off bridges.
Best Regards,
Sue
Cathy –
To clarify for you - the SSF solicits applications for research grants that are awarded annually. So what type of research is funded depends largely on what applications are received. However, the grants are not large (the SSF runs on a pretty tight budget). In 2007 the total grants awarded totaled $196,000, and this year it should be around $250,000. The SSF tries to provide the "seed" money to hopefully jump start larger studies funded by the likes of the NIH.
nisha
Quote from: Sjenny on August 18, 2008, 07:17:24 AM
Cathy:
The drug Dr. Vivino is testing is called NGX267 oral capsule. See http://www.clinicaltrials.gov/ct2/show/NCT00637793?term=sjogrens&rank=14
Dr. Watson wants me to participate in clinical trials to use a "spit test" for Sjogrens versus the standard lip biopsy. They are trying to identify "marker proteins" in spit that would make lip biopsies unnecessary for diagnosis. I'm all for that!
Kindandcaring:
So far, I've gotten no reply to my email. But from what Nisha says, the Sjogren's Foundation is looking into it. I think what distresses me is that the researchers themselves did not respond to contacts from the Sjogren's Foundation earlier. If someone was offering me the prospect of some money, I would surely be in contact with them. Have the researchers lost interest or time or what's going on with the research itself?
Sandra:
I'm avoiding Dr. Bookman at all costs! "I'd like to tell you, you have lupus . . ." - What in the world is wrong with that man!???! Thankfully he's not a psychiatrist, I predict all his patients would be jumping off bridges.
Best Regards,
Sue
Hi Sue
Wow you are helping us all by participating in that trial...and that spit test sounds like it could be a real step forward in diagnosis...I know a few have lost the ability to feel their lip properly after the Lip biop...so great news at least someone is trying to move forward.
I noticed the trial your on is asking for more recruits...it would be a a backward step if they cannot run the trials because of lack of numbers......if I was closer on this planet I d be there!..not one trial can I find for Sjogrens In Australia...
Please keep us informed on how you go..
The Vaccine and researchers..I think we have to wait and see what Steve finds out first...
If its only money and they want it..I would start collecting tomorrow..!
Quote from: nisha on August 18, 2008, 07:52:31 AM
Cathy –
To clarify for you - the SSF solicits applications for research grants that are awarded annually. So what type of research is funded depends largely on what applications are received. However, the grants are not large (the SSF runs on a pretty tight budget). In 2007 the total grants awarded totaled $196,000, and this year it should be around $250,000. The SSF tries to provide the "seed" money to hopefully jump start larger studies funded by the likes of the NIH.
nisha
Nisha
es that budget is small..however as you say it may well be enough to get the ball rolling...if this Vaccine requires only money then Im sure we all would rally our resources...and keep going until a figure was reached.
As promised, I followed up with Steve at the Sjögren's Syndrome Foundation about the Canadian research that started this thread. I also told him I would post a response here.
The SSF has tried on numerous occasions to get a response from these researchers. Nobody has ever replied. The latest attempt has met with the same result.
That raises a real red flag for us – researchers are always avidly looking for funding, so something is strange about this. The other thing that is odd about this is that the exact cause of sjs is unknown. So how does one develop a vaccine to prevent it?
When contacting the researchers in the past, the SSF even offered to make an exception to its general policy of funding only US research. Even that did not solicit an answer.
My own opinion is that the patent was applied for (in 2002) and then renewed because the researchers hope that at some future date they might actually conduct some research. But that is just my thought.
Anyway, the SSF has really already done all it can.
As a reminder, all donations to the SSF that are designated for research go directly towards the research grants that the SSF awards each year. So please consider the SSF in your giving plans.
nisha
nisha, That is very interesting about that research group. Makes you wonder if they are getting money and using for personal means.????
I have met Steve Taylor and spoken to him on the phone back when I was a moderator. His mom has Sjogrens and he is dedicated to finding a cause for the disease. I think he does everything he can. I do know that the amount of information out there and in the Moisture Seeker has increased greatly since he became CEO. The seminars are good also. If anyone has one in their area or even within 100 miles or so---even if you need to take a mini vacation with hubby overnight it is worth going. Have hubby go also. The seminar I was at had quite a few relatives trying to find out how to help their parents/siblings cope with Sjogrens. Irish ;D
Thanks Nisha for letting us know what you have heard from Steve.
I have yet to hear from him, Im hoping he gets back to me as he had indicated as well with the news, nevertheless if not I will try to contact him one more time .
That's just weird those researchers...we can but speculate WHY they (researchers wont respond.)
The point about all this thread was the response that they have a funding issue ! Why say that and reject any approaches..Steve has the contact who told me this..perhaps there is more yet to come from asking that contact.
With the patent I provided Steve I was hoping that his clever contacts could make something of it.. they could perhaps ascertain if the Researchers were really onto something..I guess no word on that score ?
Nisha Im not sure you could say that a Vaccine is unlikely to be valid because we do not know the cause of Sjogrens yet......you could say the same thing about the Faustman Vaccine..yet its now at the trials stage. the mechanisms that get us to the stage of autoimmunity are seemingly complex and interruption of any stage of the processes to the path of Autoimmunity maybe enough to prevent the disease occurring...at least thats how I see things at the moment.
I hope that Steve and his contacts keep trying to find out the real Why... it wouldnt sit right with Steve...knowing his family is involved it does not get anymore personally motivating than that !
Darn if only we knew someone who new someone to find out the truth...anybody got contacts in Canada ?!
Not one to let things go...
If I hear anything more to add i will.
Things are not always what they seem are they...its currently looking like we are back to hoping that the 'Faustman Vaccine' works at least for the time being !
Now if that Faustman Vaccine passes Phase 1 with flying colours...its worth backing all the way !!
Quote
As a reminder, all donations to the SSF that are designated for research go directly towards the research grants that the SSF awards each year. So please consider the SSF in your giving plans.
Thanks for this reminder.. SSF is certainly a worthy Cause.. that will help us all DIRECTLY !!
Quote from: nisha on August 20, 2008, 07:05:13 PM
As promised, I followed up with Steve at the Sjögren's Syndrome Foundation about the Canadian research that started this thread. I also told him I would post a response here.
The SSF has tried on numerous occasions to get a response from these researchers. Nobody has ever replied. The latest attempt has met with the same result.
That raises a real red flag for us – researchers are always avidly looking for funding, so something is strange about this. The other thing that is odd about this is that the exact cause of sjs is unknown. So how does one develop a vaccine to prevent it?
When contacting the researchers in the past, the SSF even offered to make an exception to its general policy of funding only US research. Even that did not solicit an answer.
My own opinion is that the patent was applied for (in 2002) and then renewed because the researchers hope that at some future date they might actually conduct some research. But that is just my thought.
Anyway, the SSF has really already done all it can.
As a reminder, all donations to the SSF that are designated for research go directly towards the research grants that the SSF awards each year. So please consider the SSF in your giving plans.
nisha
I'm not sure how it could be possible, but they may have run into the same issues that somehow made it impossible for SSF to send my Moisture Seekers to me in Canada, or to reply to me when I e-mailed or snail mailed them...I had to make more than a dozen long distance phone calls to the main office before I was finally able to talk with someone (many calls met with a recorded response stating that the nubmer dialled was innaccessable from my location), and it took almost a year after that to start receiving the magazine. They insisted that they had sent the magazines, read the snail mail address back to me (it was correct), told me they had replied to my e-mails and 2 snail mails, and even called me (so I know they were getting my communications), none of which I received, and no unknown or international numbers showed up on my phone. To further confuse the issue, my initial cheque for membership was never cashed (so why would they have been trying to send the magazines?), and after 4 months I put a stop payment on it...according to my bank, there was never an attempt made to cash it.
I even went so far as to contact a friend in the Canadian Immigration and Customs office to see if there was any way the magazines could have been held up (which wouldn't explain the e-mails, letters or phone calls) and she gave me the list of what could legally be held, nothing remotely resembling Moisture Seekers was there. She called me a week later to tell me she checked further and couldn't find any thing for me. I don't know if anyone else in Canada had issues, but I was starting to get the same feeling that I have gotten in the past about "cross-border communication", that it wasn't worth the effort.
It wasn't until after I mentioned my involvement with Sjogren's world, and named a few names from here (in the context of having heard from them about articles of interest to me), that my magazine finally started and has continued since. It does, however, arrive 1-2 months late. For example the issue I received Monday of this week is dated May 2008, and I know I've read comments from some members about the article on sun exposure in the latest issue...may latest issue discusses medical fakes and frauds. I do get other periodicals from the US, and they are usually delivered before the next issue is on the stands. Most personal mail I receive from the US is delivered in 3-5 days, just like mail originating within Canada. I find the whole situation confusing, but since I'm getting my mag, and I can and do make donations directly to the University Health Network tagged for this or similar research(researchers here don't receive donations personally), I'm not complaining.
Hi Linda
Yeah you are highlighting a problem perhaps with border communications..curiouser.
Certainly if 'comms' is a problem having someone in Canada could be key...not sure if SSF has connectons in Canada or not.
Kindandcaring:
This is all very puzzling. If the research was not promising - why would they bother to patent it? And if the research is promising - why would they not welcome funding?
Could you email your original contact at the sick kid's foundation and tell them you have discovered a source of funding and see what their response might be?
As I sit here in my frustration, I am sorely tempted to drive to the University of Toronto and park myself in Dr. Dosch's office to inquire about his Sjogren's research.
Road trip, anyone?
Sue
Linda –
How very strange that you have had such weird problems receiving things from the SSF. No doubt kindandcaring is right that it is a border communication problem, but it is still weird. This is bugging me – I don't like things I can't understand (one of my many character flaws)!
Kindandcaring –
I am not sure that you will hear more from Steve at the SSF. I think he feels that they are just spinning their wheels on this one because nothing they have tried has ever resulted in a response.
As Irish mentioned, Steve's mother has Sjögren's, so you know he will leave no stone unturned to explore a lead. This one just failed to deliver.
nisha
kindandcaring -
Are you in Australia? Just curious.
nisha
Quote from: Sjenny on August 21, 2008, 10:17:10 AM
Kindandcaring:
This is all very puzzling. If the research was not promising - why would they bother to patent it? And if the research is promising - why would they not welcome funding?
Could you email your original contact at the sick kid's foundation and tell them you have discovered a source of funding and see what their response might be?
As I sit here in my frustration, I am sorely tempted to drive to the University of Toronto and park myself in Dr. Dosch's office to inquire about his Sjogren's research.
Road trip, anyone?
Sue
Sue
Yeah If I were on that side of the planet...id work in a plan to pass by.. drop in and see I could not find out ! ;) :)..there is no harm in trying to get to the truth...the truth is to be found
The problem at the moment is ..we Still don't really know what is going on..
I did the Funding offer straight away to the contact (weeks ago)..unfortunately Zero response thus far..I dont know why it is so hard to communicate at the moment with these guys..Linda's experience makes you think.
Nisha has relayed that Steve has had no joy yet again..
yet at the moment we are not aware of the circumstances.. meaning was there a response to say they dont want funding or if they just never responded......
If they never responded then just perhaps the communication is breaking down before it gets to the Researchers.
Its all speculation...and if we dont hear any more....the confusion will remain indefinitely.
I guess one needs a well connected contact either in Canada or who is going to Canada to have more of a chance of finding out....however if one was innocently passing by the Lab..then whats the harm in trying !
Nisha
Yeah though I do hope Steve does reply to me as he said he would.
Perhaps you could find out if he got to talking to the Researchers ..or if the communication was other than verbal and one way only (no response)...if you see what Im gettin at
Yeah I can tell Steve is well motivated just the same as we are..and as such Im sure he would not mind sharing the circumstances of the communication, so that we could understand a little better.
kindandcaring -
I gather that nobody at the SSF ever managed to talk with the researchers. Phone calls were not returned and correspondence was ignored. As you say, too bad we are not in Toronto so we could march in and bang on their desk.
Yeah...you are right nisha... !!
Now we Know that a comm's issue Does exist !
Anyone in Toronto ? interested in finding out for us ?
I live in Australia..its out of my budget zone just to pop over..it would be easier for someone in Toronto region for sure..pretty please anyone up for it ;D
Until we know what the go is with the Researchers we will be forever wondering..
There are a lot of us..Sjogrens Sufferers...we need to show our will to want to get better and communicate with these Researcher guys ..that we want and need their help..if they have a Vaccine and believe it could work then let them tell us what has stopped any further progress..and let them tell us what would it take to start it rolling again...
You could argue that an explanation does not have to be forthcoming...actually I think it is absolutely..
To ignore offers of funding after being we had been told they have no funding..means they absolutely need to clarify for all of us what are the reasons..for the halt on the Vaccines progress and its current status and it's future..!
If there had been a Vaccine for say HIV and it was published around the world as THE BREAKTHROUGH for that disease..then the question ..would it be allowed to be forgotten by the media the public..governments !?
I think the answer is no..questions would be asked and answers expected as to why a HIV Vaccine's progress had stopped ..
Anyone got ideas how to get an outcome ? keeping in mind their seems to be a complete communication breakdown at the moment...!
I have a friend on the Canadian Association of Research Ethics Boards, and she is going to look into the whole thing for me... I'll let you all know what she finds out.
Linda -
Can hardly wait to hear what she finds out.
nisha
I am still ruminating over Nisha remark----If we don't know what is specifically causing Sjogrens how can we produce a vaccine. Good question. Irish ;D
Quote from: Linda196 on August 23, 2008, 02:24:11 PM
I have a friend on the Canadian Association of Research Ethics Boards, and she is going to look into the whole thing for me... I'll let you all know what she finds out.
Sounds like a good move Linda..thanks heaps for your efforts with this !
Quote from: irish on August 23, 2008, 09:49:17 PM
I am still ruminating over Nisha remark----If we don't know what is specifically causing Sjogrens how can we produce a vaccine. Good question. Irish ;D
Hi Irish
Yeah it is a good question. I had a go in an earlier post to try and explain ..I could be wrong though Im speaking in general terms...to help you and others Ive posted a link to the Patent the researchers have filed..it does explain things technically ...one can however figure it out by reading the overview/summary..and repeatedly skimming.
http://www.pat2pdf.org/patents/pat20080058271.pdf
ICA69 (Islet Cell Autoantigen 69)
ICA69 is the target for their candidate 'Peptide' Vaccine to prevent Sjogrens...the Vaccine makes the recipient ICA69 deficient..in the mice becoming deficient of ICA69 provoked the positive response ...a response even in mice who had fully develop Sjogren's.
If anyone can explain it better please do share..Im trying to explain it more simply and (almost) in a one liner as best I can..but I might have missed something in the translation...its certainly can be improved upon :)
I will be giving a copy of the patent to my Immunologist in a few weeks for his perusal (and hopefully some comment)
kindandcaring - Thank you for keeping this post alive! Hopefully we'll get some info. soon.
Linda - what a great contact to have! I hope your friend has better luck contacting these guys than SSF has had. I'm assuming she will, given that she is on the Research Ethics Board. Thank you!
Cathy
kindandcaring -
Thanks for the link to the Patent.
I guess the part I don't understand is that a vaccine is generally given to prevent a disease, yet this says that "..in the mice becoming deficient of ICA69 provoked the positive response ...a response even in mice who had fully developed Sjögren's".
If the mice already have sjs, then how can it be a vaccine instead of a medicine to either alleviate symptoms or cure the disease?
nisha
A vaccine is a biological preparation which is used to establish or improve immunity or resistance to a particular disease. The basic difference between a drug and a vaccine is the biological source, and even that doesn't always stand up, because more and more drugs are being developed from recombinant DNA.
Vaccines can be prophylactic (e.g. to prevent or lessen the effects of a future infection by any natural or "wild" pathogen), or therapeutic (e.g. vaccines against cancer are also being investigated).
Every definition I find states that a vaccine is used to prevent a disease, so I am still confused how it can work in mice who already have sjs. Sorry if I am being dense.
nisha
Nisha, this is the most comprehensive definition of vaccine that I could find:
http://www.online-medical-dictionary.org/Vaccines.asp?q=Vaccines
Hello all,
I think that I can explain the ICA69 finding a little better [I wrote it after all :D]. Here is a long summary in lay terms.
First, ICA69 is a protein made in several tissues including the pancreas, nervous, salivary and lacrimal glands. The function of the protein is unknown. However, in certain autoimmune diseases, the bodies immune system mounts an abnormal immune response to ICA69. The response is considered abnormal because ICA69 is a self-protein as opposed to a foreign protein (like from a virus). This immune response can be measured by measuring antibodies or T cell responsiveness.
Before 2002, only Type 1 diabetes patients were known to have immunity to ICA69. Thus, when I was working in Dr. Dosch's lab as a PhD student at the time we wanted to see how important ICA69 was for the diabetes disease process. One way to do this is to take a mouse that gets diabetes and knock out that protein and then check to see is the knock out mouse still gets diabetes. We did this with ICA69 in NOD mice (these mice develop spontaneous diabetes, thyroiditis, and Sjogren's..though only the diabetes aspect of this mouse is extensively studied). The ICA69 KO mouse still got diabetes normally, meaning that ICA69 was not critical in that disease. However, to be complete we checked for Sjogrens as well, and surprisingly the mice developed markedly less disease. THat was how the ICA69 Sjogren's connection was founded.
Once we knew that ICA69 was important in Sjogren's syndrome in NOD mice, we wanted to see if dampening the immune response to the protein would reduce disease. This is called antigen based immunotherapy or immune modifying therapy and you are right "vaccine" is not the proper word. There are several ways to inject a protein into a mouse to elicit a dampening as opposed to an activating immune response. This was done in NOD mice that had full Sjogren's syndrome and the therapy significantly improved disease.
However, antigen based immunotherapy protocols work well in mice, but the protocols have not been standardized well in humans. For example, an immunotherapy trial was done for MS, but the trial was stopped because the patients got worse disease. A trial was done for T1 diabetes and showed no effect. That being said, there is new, promising data showing antigen based immunotherapy may work in humans if the patients previously showed strong response to the protein being used in the therapy. For example, in a newer T1 diabetes trial, patient's who had previous strong immune responses to insulin showed significant improvement when they received oral therapy insulin. But as you can see, this type of therapy is still being worked out in humans and it is being actively pursued by many labs.
We next tested to see if human SS patients also mounted abnormal immune responses to ICA69, and about 3/4 did. A slightly larger study using a different test (done by US and Australian researchers) found about 1/3 of Sjogren's patients targeted this protein. So... Will ICA69 immuotherapy work in humans? If the proper sub group of patients are selected (ie ones who respond to ICA69) then there is a chance that it could work, but, only if the immunotherapy protocol is first better understood for human use.
I left the lab in 2003 and went to medical school, but I came back several times to check on the progress (I finished medicine and am currently doing some research on type 2 diabetes before I start residency in July). Dr. Dosch told me that he wrote several grants on the role of ICA69 in Sjogrens...more specifically, to expand our initial patient numbers, to learn better of its diagnostic values, and to try begin a small trial to see if there is benefit for humans. However, for reasons that I do not know, every grant was turned down (but trials are very expensive, and lack of funding likely had a lot to do with it).
Hope this helped clarify some things,
Dr. Shawn Winer MD, PhD
Welcome Shawn :)
Thankyou for popping in and sharing knowledge...it is I can assure you Most Appreciated..!
I never thought when I started the thread and mentioned the patent that yourself who wrote it would end up helping us explain it...it is Fantastic to hear you speak..thankyou !
On behalf of Everyone Also a huge thanks for all your work which we are talking about here. !!!!
Until you explained it I had been a little confused as to ICA69...now reading your explanation I can see that it is a protein produced by our bodies organs (pancreas salivary gland etc.) however it has no known function and has been seen to have become a target for our immune response..when one has certain Autoimmune Diseases...like Sjogrens.
Thanks also for the further explanation regarding how many Sjogrens people could have quantities of Autoantibodies against this protein....those that a proposed Vaccine could more likely help....even if we use 30% as the number of people it could treat (using the lower UK Australia Study numbers) .it could still equate to large numbers of people being helped...
Sounds in my humble viewpoint it is worth funding further...and hearing you explain that Dr Dosch tried several times to get funding....he must think it worthy as well.
So we are looking at a Big funding question..or why is it so (not being given funds)..!?
The other issue of course is we have some possible funds that could come through SSF but some kind of problem is stopping that message getting through....not sure still..however Linda might well find out for us through her contact.
Lets hope your work gets a chance to get to a clinical setting..I know we would all like to see it come good...realising at the same time that a lot has to occur for this to be successful and to get to that stage ..and that it might not prove successful... yet from the journey we could learn more from whatever the outcome.
Benefiting us all.
Yet we will never know unless we can get on that journey forward.
Thanks again for your contribution, on this subject and for your future studies.
Thanks Shawn...
btw curious to know how you came across us here !? :)
All my very Best
Hello Shawn, welcome to Sjogren's World and thank you very much for representing "the other side of the coin" so to speak. It is heartwarming to meet doctors like yourself and Dr Birnbaum (who also posts here in the nervous system threads) who are so involved in trying to improve life for SjS (and other autoimmune) sufferers.
These diseases must be both fascinating and frustrating to researchers, because each disease can vary so much in symptoms, presentation, pathology and response. As you mentioned, the ICA69 protein presents in varying portions of patients, and other facets differ as well, for example, some of our members have IgG deficit, while others have high counts; and even the specific markers are sometimes absent, or present in various combinations.
By the way, please feel free to mention to Dr Dosch that if and when he gets to the recruitment process, this forum has many eager and willing volunteers, if location can be overlooked!
Dear Dr. Winer:
I am thrilled and excited that you found us and deeply appreciative of the research you conduct.
The Sjogren's Syndrome Foundation { http://www.sjogrens.org/research/ } is trying to contact Dr. Dosch to offer possible funding but to no avail for some mysterious reason. Would you contact Dr. Dosch about this funding possibility for us?
If more funds are needed, many of us are very willing and motivated to explore every possible avenue, write letters, contact political powers, shake bushes to get those grants approved and do whatever it takes for this very important research to go forward.
Best Regards,
Sue Jennings
Shawn –
THANK YOU for your very clear and understandable explanation. And thank you too for settling my vaccine question! I am particularly fascinated by your explanation because I am one of the very small percentage of Sjögren's patients with Sjögren's related Pancreatitis.
I will be passing this information along to the SSF tomorrow.
I am so glad you came along, and echo the others that it is great of you to take the time and effort to post.
nisha
Nisha/Everyone,
This Vaccine..for us perhaps we should think of it as a Treatment which has Preventative Qualities..!?
Its been quiet for (only) a couple of days...!
Hoping the wheel is still turning with this someplace and favourably :)
I can't help feeling that if this research were so promising, it would have been funded. Someting about this does not make sense and I'm beginning to think we will not find out why. It seems others before us have tried to no avail. This is so frustrating. (If I had more saliva I would spit).
nisha
Yeah the only spit I do these days ..is spitting the dummy :)
Certainly a mystery...the answer is out there ..and I think we need to know period !
nisha, I am not trying to be a wet blanket, but I agree with you. There is something here that doesn't meet the eye. Irish ;D
The way I see the questions we need the answers for...
Is it being denied funding because the Vaccine was not deemed likely to succeed ?
Or is it because its only for Sjogrens(not a big enuff disease) and thus not deemed worthy the investment ?
Or Other ?
Sounds like a poll :)
I suspect Sjogren's is not a "big enough" disease to attract attention. I never heard of it before I got it and neither have any of my friends or family.
I suspect researchers think the big money is in diabetes and don't know how many millions of us there are - :(
Sue
Sorry, but I don't subscribe to the "sjogren's was not important enough" theory. I did a bit more probing on my own, and they did not follow through on trying to obtain funding (and I'm not talking about the SSF here).
So I am back to thinking that something isn't adding up.
nisha
Hi nisha
Please can you elaborate what you have found out (funding)..any light on this murky issue would be enlightening. TIA
Unfortunately what I learned was passed on to me in confidence, so I can't elaborate. I knew as soon as I wrote that post that I probably should not have since I can't say more. I'm not actually sure why not – maybe I can find out.
nisha
Nisha
Thankyou for letting what you could out of the bag... ;D
Hope the 'source' has a change of heart and finally realises WE deserve to hear the truth...
The truth is out there...I know many are asking questions so perhaps we will find out in the near future.
Wouldnt it be nice to either cross this one of the list or put it back in...I mean this is all we care about...this information and more would help to understand if its worth more effort.
kindandcaring -
I will ask why I was asked not say anything, but it will be next week what with the long weekend (here) and Holiday Monday.
nisha
nisha
np
please dont stress ...if they dont want to ....they dont want to ...up to them...
Enjoy the Xtra day :)
anyone heard of...anything...anything at all about this ?
At the moment..I still do not know what to make of it all...despite co researcher/author of the Vaccine Dr Shawn Winer posting ..
Unfortunately it did not answer or explain the reason why the Vaccine has stalled (it hinted that a lack of funding) nor why offers of help/potential funding(from SJS) are going begging....!
Linda was going to talk to an Ethics Board Contact...any news Linda ?..TIA
Nisha was checking to see if she was allowed to say more about the funding history of this vaccine..any news Nisha ? TIA
And I think that's about it for a recap and status question/update.
If anyone has found out more..please do post... :)
Kindandcaring -
I did ask if I could elaborate on what I knew, but I was told by someone who really should not have been told me, so I need to keep the confidence. All I can repeat is that the SSF is not the only organization that tried to offer funding and never received a response.
I keep hoping Linda will have more for us. I have been trying not to think about this too much because it was driving me buggy. Maybe some day it will all become clearer - but I am not holding my breath.
nisha
nisha
Yeah this thing drove me buggy as well..best not to let it though....
As conspiracy stories go though it certainly is shaping up to be a good one.
I just dont get WHY the need for secrecy....this only occurs if something needs to be known by the public...something someone believes may cause a stir...
Nisha might I suggest..if you cant tell the public please tell Linda (pass on to ethics contact) ..
One day when it's deemed OK..perhaps we will be allowed to know what has happened here.
I will leave my thoughts at that...because that's all there is at the moment....strange the Researchers would like such negative energy related to them being directly created by their apparent secrecy and silence...truth is we have not heard from their side.
In my view best for the researchers now to release a statement that covers our concerns regarding refusal of funding and the status and future if any the Vaccine has.
It really would not be that hard for them would it .... :)
Kindandcaring –
The silence on the part of the researchers seems to be their pattern. It makes no sense at all. They are the only ones who could clear this up for us. I suspect we will never know.
nisha